HIV-related stigma: interview with Alexander Pastoors
Firstly, what led to you becoming board chair of the Dutch association for people living with HIV (Hiv Vereniging) and what does this role entail?
Before I became chair of the Hiv Vereniging, I was the board secretary. Towards the end of my predecessor’s term (around 3 years ago), I applied to become board chair for the association. I enjoy this role because, as chair, I can be far more active in the field and make a difference to issues that are important to me. For example, as chair, I feel it’s important that I help people to understand what the Hiv Vereniging stands for and how we can help people living with HIV. This is something that Pieter Brokx, director of the Hiv Vereniging, and I work closely on together.
Your talk at NCHIV will be about stigma associated with HIV. How serious do you think the issue of stigma is?
At the Hiv Vereniging we see that stigma is still an issue on a daily basis, but the extent of the problem and the form stigma takes depends a lot on the person and their situation. We really can’t generalise; it depends, for example, on how far the person is in terms of accepting their HIV status, and on their background, their personality and the extent to which they see HIV as being a part of who they are. We often hear quite shocking stories from people who have spent years thinking about whether or not they should tell people that they are HIV-positive. This in itself says something about how serious an issue stigma can be. Women are often afraid of hearing things like: ‘You must have led a really wild life’, and gay men don’t enjoy being on the receiving end of remarks such as: ‘It was on the cards, wasn’t it?’. However, often people find that once they’ve told others that they’re HIV-positive, the reactions are fine, although that’s not to say they don’t receive any negative reactions at all. The main reason for telling others is that people find it hard to carry such a big secret, and therefore, for someone with HIV, coming out can be liberating. Nonetheless, not everyone with HIV feels strong enough to come out confidently, and this is exactly why it’s important to reduce stigma and thereby relieve the burden that many people living with HIV carry with them.
Part of the problem associated with stigma is that people living with HIV are often confronted by moralistic or highly judgemental people and/or communities. This isn’t something you can change easily and, unfortunately, is something that we frequently see in communities where religion plays an important role. I think this is why HIV-related stigma is a far greater problem in countries where religion is important and where there are fewer sexual rights, for example in African countries. The problem is that when people from these countries migrate to the Netherlands, the cultural influence of their homeland remains strong. Furthermore, they often continue to seek support within their own community, in which the home country’s values regarding sexuality persist. This kind of environment can make it difficult for people living with HIV in these communities to make their HIV status known and, as a result, HIV-related stigma persists.
I often compare the problem of stigma with the Gordian knot: there are many different interconnected strands and it’s therefore difficult to unravel. There isn’t a single simple solution to reducing or eliminating stigma, instead we need several programmes targeting different groups. Of course, the question is whether we can completely eliminate stigma, because everyone, including myself, is guilty of having stigmatizing thoughts now and again. So, we should strive to make everyone aware of these thoughts and present a realistic picture of people living with HIV, free of moral judgements about how a person should live their life.
How does stigma hamper the healthcare for people who may be living with HIV?
We are increasingly becoming aware that stigma may be the most essential and greatest barrier to controlling the HIV epidemic. Firstly, stigma has an effect on simply getting a diagnosis. For many people, even if they know that they have been at risk of an HIV infection, taking the step of seeking a diagnosis can be a big hurdle because of society’s preconceived ideas regarding HIV. This means that people are diagnosed and obtain treatment unnecessarily late.
Secondly, there is also a lack of knowledge among certain medical professionals who are not infectious disease specialists. This can lead to misunderstandings; for example, it’s not unheard of for doctors to put on a second pair of gloves for an examination if they know that someone is HIV-positive. Any unnecessary action or behaviour that’s open to interpretation by people living with HIV can be extremely hurtful to these individuals and raises the barrier for seeking essential medical care.
What do you think needs to happen to reduce HIV-related stigma?
I think that it’s very important to show the general public that premature death is no longer common in people living with HIV, but that we can live a good live, have children, have sex normally and are not infectious if we take our medication and have an undetectable viral load. Last year this was the focus of a nationwide campaign run by the Hiv Vereniging and the Hello Gorgeous foundation.
I also think it’s important that all relevant parties continue to work at presenting a realistic picture of a life with HIV, not only to the general public, but also to the medical communities. I really believe we can still achieve a lot with the latter. By increasing doctors’ awareness, infections could be identified earlier and uncomfortable situations (such as with the gloves) could be avoided. In addition, doctors can play an important role in changing the perception of HIV in the rest of society. They hold a highly-regarded position in Dutch society and, as such, people value what they say. I therefore would like to see doctors becoming more aware of this role and for them to actively combat negative perceptions in the general population.
Finally, the people living with HIV themselves can also contribute to reducing stigma. Particularly the more outspoken ones can help to give others the information they need. Of course, not everyone is outspoken and we don’t expect that. However, at the Hiv Vereniging we do try to give people the necessary tools, for example through workshops, to give them more autonomy and make their life with HIV easier. We hope that this will help people to be as open as possible about their infection at times when they feel it’s important, thereby in turn influencing those around them and informing them of what it’s really like to live with HIV.
As chair of the Hiv Vereniging, what would you still like to achieve?
I’m currently working together with staff and the board to improve the Hiv Vereniging’s image; how are we perceived by people living both with and without HIV? The big question, of course, is how can we make the diversity within our association more visible and improve it even further? I think the most important thing is to show that all people living with HIV should feel at home in our association. We hope that this will help us reach other groups besides just gay men, who we currently see the most frequently. Together with all these people, I hope we can work to reduce stigma.